Speaking of RA

Tuesday, May 15, 2018

I have home-nurses who come twice a week to draw blood for labs, change the cover on my port, take my vitals, and quiz me about bodily functions. They are great, really. I can not complain. As you know, the Mr. has always drained my lung. He's good, and I trust him. See, he's an OCD personality, so he's thorough. When it comes to medical stuff, I'm down with that.

Back in December when I first got the drain tube, the home-nurse agency we selected trained him, observed him a couple of times, and signed off on it. This time, we found out that, that particular agency doesn't handle home IV antibiotics, so we had to chose another. The policy of the one we chose is that their nurses always do Pleurex drains, because its an opening into the body and keeping things sterile and clean are the #1 priority, and for liability reasons and blah blah blah. So we kind of went back and forth a bit and Pam, the nurse supervior, conceded to come over the next day and "observe" him doing it. Cuts down on my ultimate costs, because its less home-visits. I'm not on Medicare or Medicaid, I have private insurance, so no free ride for me. Anyway, the moral of the story is the new tube is working like a charm! happy happy happy! And Pam was so impressed with the Mr's technique, she commented that he did it better than even some of her nurses. :) He grinned from ear to ear, and he should be proud of himself. I'm proud of him.

I have to see Dr. O tomorrow (everybody really does call him "Dr. O" because I think he's from South Africa or Kenya, and has a name that is very hard to pronounce.). He's the infectious disease specialist here, and he's monitoring my antibiotics. I'm in week six (that's counting the two weeks in hospital) of the treatment, and if he gives me a clean bill tomorrow, then I can get the port removed. Yay!!!

Constant Road Blocks

Its always something ain't it? As of tomorrow, I will be completely out of leave time. I get one more full paycheck, and that's it until my pension kicks in. How long will that take? Only God knows, because this IS the gov't, and this is OPM we're talking about. I've heard some say it kicked right on time the next month, and some say it took 2 or 3 months before it started. And lets remember, it took OPM 9 months to get to my Disability Retirement package, only to respond that I had not proven I'm sick enough for the disability part. That's why I had to do what I did and just take the early retirement. That being said, there is the volunteer leave program, wherein other employees with scads of leave on the books (like I used to have), and they can donate hours to me. The more hours I get, the less days of leave-without-pay I'll have to eat. So this program requires a letter from the doctor, stating diagnosis, prognosis yadda yadda. So I got that. Took it to personnel....and they promptly rejected it (this was a week ago today) because OPM requires a start and end date for treatment. *cue deer in headlights...crickets chirping* My letter didn't state that. Fresh hell for that day. This meant I would have to take the letter BACK to the doctors office and ask J-the-nurse to fix it. Doctor G and J the nurse are off on Wednesdays, so it was Thursday before I could get the letter back. I sat down and wrote J a nice little note apologizing for having to return it and taking up her time blah blah blah. Today is Tuesday....still no letter. And I'm out of leave tomorrow. effing wonderful. You know, people really don't have a clue nor a care what some are going through....its all about them and their world and what's happening to them. Forget the fact that my insurance and my self, have paid literally thousands and thousands of dollars to them over the last two decades. Ok, enough. So I have an appointment this afternoon with Dr. C the surgeon. I'll get Trisha his nurse to do one for me. *sigh* I'm not going to lie. Retirement is scaring the hell out of me. I've worked full time since I was 17. Its like a death. And our standard of living is going to diminish greatly. Most of my monthly pension is going to go to health insurance, and taxes. We'll be poor as church mice. That's one of the sad parts. we finally got the mortgage paid off and finally had enough each month to pay the bills, feed us, and plenty left over to play with. All will be gone. We'll manage. I'm a worrier. Retirement party is 24 May. I'll post pictures.

Blood Sugar

While I was in the hospital, it was discovered that I have high sugar (I'm sweet like that :), and was given insulin while inpatient. When I got home and saw Dr. G the next week, I had my A1C checked. Diabetic is a score of 7, mine is 10. 10!!! shit its always something. I've been told the roids will make sugar spike and the antibiotics will too. I'm tapering off the roids again and hopefully I'll be off the IV by the end of the week. That being said, I had to buy a glucose meter, and I'm watching my sugar intake. (Dr. Pepper!! WAAAA!!! I miss you *sniff sniff*). But before that started, the day after I bought the meter, I lost it. We turned this place up side down, twice. No meter. 3 days later, I found it in my purse....the purse I looked in 3 times. Meds or age? You decide. Apparently the Mr. IS right...I'm dumb as dirt and clearly half crazy. *sigh again* On a good note, just as I was about to walk out the door to buy a new meter (thankful they're not that expensive....its the strips that are outrageously, ridiculously expensive. $40 for 25 strips I shit you not), I grabbed my purse to get my wallet, and whaddayaknow? There's the meter. Just glad I found it. shake-my-head.

My Mental State and Stability

Some days I'm fine, some days I'm not. I still cry a lot. A lot. I cry because I'm tired of being sick. I cry when I think about all the things that this disease has robbed me off, and not just my health. I cry when I think that this latest episode is partly my fault because, once again (yes, I've learned this time), what I thought was just a bad flare...was not a bad flare. I cry because all the statistics say I'm only going to get worse, never better. Every time something happens, I loose ground that I don't get back. And then I dry my eyes (which is not always easy with the RA in them too), and move on. Whining and crying is not going to change a dang thing. It is what it is.

More Future Possible Changes

Son #1 wants us to move out to San Antonio and live with him and his wife and step sons. They have this big house in a gated community. I dunno. I have issues with this idea. On the other hand, it would solve some of the problems we have where we currently have lived since we moved here in 2006. I have issues, but for some reason, I keep getting this nudge in my spirit that this is a good thing for us. And I have been praying for some time, to be somewhere else. Live somewhere else. A change of scenery, a brand new life. And my son's wife is a registered nurse, that's convenient. Son 1 and his wife will be here on the 23rd to attend my retirement ceremony. I'm sure we'll talk then. I'll keep you posted.

So for now, I'm going to leave you with a song. I listen to it almost everyday. If you've never heard of Gregory Porter, please check him out. I've not found one tune he sings, that isn't off the charts. An incredible voice. This one is my favorite. I believe its an old Nat King Cole remake. It makes me smile. :)

See you soon.

PS. I just want to say that I mostly especially know how very blessed I am. There were so many things that could have gone wrong, that didn't. Statistically speaking, I should not have survived this. And I did. Just like the Pulmonary Embolism a year ago. I did. I survived. I am thankful and grateful to the One who gives me life.

PSS (or is it PPS?) - I've lost almost 25 pounds since I went in the hospital. yay!

Saturday, April 28, 2018

I've given up that the doctors are, at some point, going to start listening to me. Went for my post-op/post-hospital-stay check up on Thursday. Lung is filled again, and I kind of already knew that, the shortness of breath had returned, and eating is difficult. Two signs I'm full up. From Monday to Thursday, I'm full. I knew it was going to happen, I just figured it would be a couple weeks, not a few days. But its happened. So what's next?? You guessed it, I'm going back in Monday for the original outpatient surgery I went in for 3 weeks ago to have a new drain tube installed.

At one point the doctor (he's also my surgeon) had told me that I would not leave the hospital without a new tube. Then he changed his mind. Said he wanted me to heal more first. SMH. ok, whatever you say.......and here we are. You know, when I saw him Thursday, I could almost see him mentally wringing his hands. I have been completely opposite of what he has expected from day one. That's what happens when you're not use to dealing with this thing that has an underlying, unpredictable autoimmune disorder that is driving this bus. And it goes where it wants to. Like the old joke, "what does a hungry bear eat? Whatever he wants!" When he expects this thing to Zig, it Zags. So far, everything he's "predicted" with my lung, has not gone that way. Its almost funny, in a way. I keep trying to tell them, and then they ignore me, and I get to watch them run around playing "catch-up" and this raggedy old lung leads then down rabbit holes. I'm one for the books.

There's one doctor there, a pulmonologist/hospitalist (how you like that new Socialized Medicine title - Hospitalist?). He's clearly Middle Eastern origin, not a problem for me. What is a problem, is when some upstart doctor gets short with me because I cut him off when he was trying to "school" me on prednisone/Humera and my immune system. DUH!!! He's the same dingle-berry who, back when I was there in December, when I complained about the flu headache I'd had for 3 days, and had complained and nobody listened (pain meds, you know...) and he told me I was complaining to the wrong people and that "...if you need a police, you don't go get a fireman..." I looked at him like he'd lost his mind and told him I'd complained to everybody who'd come in my room including the girl who MOPPED MY FLOOR. Now, if you are unwilling to help, please leave my room, I'm sick. Dr. C, my current surgeon came in later to talk about installing the first tube. I told him what happened, and he said "...unfortunately, he doesn't have a clue what he's doing. I don't believe in people hurting, I'll order you something..." he did. Headache was gone. So anyway, dingle-berry was coming to see me every day, and I just smiled and nodded my head till he would leave, and then I'd give him the finger after he shut the door. I know!!! I don't give the finger to anybody, its not me. But I was giving him the two-bird salute behind his back. Dumb ass.

You know - When I think about the fact that I worked for weeks and weeks, septic and sick and full of yukky infected fluid, it boggles my mind. Dayum! I can suck up some sick, eh? I know many times, I just put my head down on my desk, I felt so bad. But I kept going and going. I worked the day before I went into the hospital. Little did I know it would be my last day. My last day.....

Went to the office Wednesday and cleaned off my desk, and brought home my few personal items I still had there. Thursday morning, I went in and met with my Personnelman, and he and I went over my retirement application, and crossed all my t's and dotted all the i's. And it was done. 9 weeks of boot camp to get in 30 minutes of paper work to get out.

And now, I can say where I worked, and it better explains why it took so long, and how I got where I am. When I was 19, I joined the U. S. Coast Guard in 1986 and did 5 years on active duty. In May of 1991, after I was discharged, I came back home and got a job with the U. S. Army Corps of Engineers. Been with them ever since. I have been a government buyer since 1989 and got my first gov't credit card in 1992. Last year, I applied to OPM (Office of Personnel Management) for a Disability Retirement, applied in March. I was in the hospital in December, when I got my letter from them telling me, basically, that I had not proven I was sick enough for disability retirement. I guess terminal lung disease doesn't hit the radar. Also, my rheumy and my GP downplaying it in the paper work didn't help. Mild ILD. Huh. well, as far as I know, dead is dead whether it takes 2 months or 5 years. ILD is progressive, not to mention that it had taken them 9 months to get to my application, and the medical information in my package was aged and no longer valid. Hell I was in the damn hospital getting a tube stuck in my chest, when I got their "dear john" letter. But we must remember,, these are over-worked government workers, working for a system that is broke financially and everybody gets turned down the first time. You have to fight for it. Well, I'm too sick to fight. So my boss offered a second solution, and I took it. See the problem is I'm too young for real retirement. I have the time, just not the age. But there is a such thing called a VERA, Voluntary Early Retirement Authority. A VERA has to be approved by the Commander only and is given out for hard-ships such as health issues for ones self, or a family member that they will have to be full time care giver too, stuff like that. So that's what I did. I have set my official retirement day as 25 May. I will run out of sick leave next week, and actually "may" have to go back and work a couple of weeks so I still get a pay check till the retirement is done. I don't want to, but I will as long as I feel ok. If I get this new tube Monday and can keep it drained at home, I can do it. But we'll see. I have to call my time keeper Monday and see where I stand. I think I have enough to get me through next week, then I'm out and will have no more paychecks until my pension kicks in, which could be June. So yeah, I may have to go back for a couple of weeks. We'll see.

I guess that's enough for now. Still not a lot of hospital details. Not much really to tell, I've already talked about the highlights. So ya'll take care, breath easy, love your people.

Friday, April 20, 2018

It was/is a massive infection. Directly linked to the tube and its not working back in February. The infection is not in the lung, its the fluid that had built up to a huge level...if doctor would have listened....but any way it is what it is. I have a chest tube sticking out of me the size of a garden hose.

I came in on the 11th last week just to get the tube replaced, and I am still here 10 days later. The fever wasn't flare, it was infection. Infectious fluid that ran rampant around my body for 7 weeks. I came close this time. Real close. I'm still far far away from being "out of the woods". And I've already been told that when I do get to go home, I will be on IV antibiotics for sometime, and oral antibiotics for as long as 4 months, just depends.

I cry as I sit here and type. I'm afraid I'm not going to make it through this one. I have a long road of recovery ahead of me. Months. And its forcing me to take early retirement without the disability. I'm depressed, homesick, and tired of the fight. But I have to keep fighting, I have no choice.

If you pray, please remember me and lift my name up, when you do. I'll check in again soon. I would have posted days ago, but I just didn't know where to start. Not even sure I've done it good with this. and when i'm up to it, I'll write a post with more details of everything that's happened.

Sunday, April 8, 2018

I woke this morning, and as I usually do, I gave myself the mental once-over, then got up and moved around a bit and thought...."Oh man!! very little swelling. :) its gonna be a good day" *cue that X noise you get with a bad answer on Family Feud*. I started thinking about all the stuff I was going to get done, and within 2 hours of getting up, feel good was gone, fever back firmly at 100, face flushed and hot, tummy sick. Well at least I got most of my laundry done, and got the dishes loaded and washed. its all good I guess :/ I still cry a lot. Frustration, pain, fear. I'm just ready for it to stop now. I need a break. Its been since February now. I am tired.

Nothing new to pass, anything at this point would just be a repeat. Still fighting this hellacious flare, tired beyond imagination. Keep sending me good vibes and prayer for strength to keep going. This is going into week 8 now, I think. 7 or 8. The pollen should begin to move on soon, I should begin to feel better. haha but you never know what you'll get.

Tuesday, April 3, 2018

Because what choice do we have? Oh yes. Even just as recently as this weekend I proclaimed, this is the Last Flare. No more. I'm done, stick a fork in me, done and dusted. The Mr. just looks at me like 1) I have some supernatural gnostic information he's not privy too, or 2) I'm going to off myself....closer to 2 because I sure am not "enlightened" and don't want to be. All that New Age-y stuff is for some, and more power to you, but not for me. Not my flavor. But yeah, I decided enough was enough. And then the fever breaks, and we feel a little better, for a little while, and clarity in thinking returns (we hope).

Still in the fight. I've been up since 3:30 this morning. Woke up with over 101 fever. It was on one of those tick marks between 101 and 102. It doesn't usually get that high. I think I need to be even more diligent about keeping up with the roid doses. I've not written anything down for yesterday, and whats the point? Its not like I can REMEMBER when I took it. I can only move forward from today. Any who - I had one ibuprofen, and Dr. G said one a day for 3 days in a row was ok, but after 3 days, I have to break off for a week. So I had one left, and I took that and a Tylenol and 5mg of prednisone. It came down in a bout an hour, but still at 100, so at 4:30 I took a full 10mg prednisone and drank plenty of ice water to help cool me down. I fell back to sleep and woke up at 6:30 drenched in sweat, but temp was normal. These are things we suffer. Things that nobody would even know about if I didn't tell them. And most times I don't. what can anybody do?

Momentous decision - I have found a new Pulmonologist, and will be requesting a referral from Dr. G as soon as this flare goes away. I want all new test, fresh new eyes that have never seen my lungs, I want a fresh perspective. I am also seriously considering a new GP.

I love Dr. G. I've been seeing him 24 years now. But I just can't forget nor get over, my sitting in his exam room back in October, he sitting on the stool across the room from me, me crying because I was so sick, and had been for many many months, ticking off, what ended up being classic effusion symptoms on turbo, his saying the air flow was diminished up to my shoulder blade making me think the ILD was progressing hard, and he just sitting there with his chin in his palm and nodding his head at me. Why not get a chest xray? The machine is just down the hall, he has all his own equipment. But no. He sat there and watched me cry as I talked about how sick I felt, literally feeling myself dying, and that's the truth. And all I needed was a drain??? I can't forget that. I became the proverbial "dropped ball". and because of that, I nearly lost the bottom 1/2 of my damn lung. Because of either their lack of care, "she's a drama queen", "she's making this up", what ever he was thinking doesn't matter. What the hell would have been wrong taking 10 minutes to snap an xray, my insurance would have gladly paid him for???????? why????? If he had taken that xray that day in October, I probably would already have had the drain tube, and would have been feeling much better. IBS? More likely the quart of fluid that was on my lung was pushing everything to the right, into my stomach and my heart. See, this is stuff he utterly failed to discuss with me. Utterly failed.

But it is what it is. Baby steps. First - get on the other side of this flare. Second - Get a referral to the new Pulmonologist. After all new test and his new assessment to my condition and my future, then I think I will begin to look for a new GP. At this point, no plans to replace Dr. Wonderful the rheumy. And she's the one that should go first. But! Again, she really doesn't do a thing for me except prescribe the Humira and the prednisone. She doesn't even order xrays on me. A means to an end. I really don't need a new rheumy. she does just enough that I don't have to travel to get to a new one as I will be with the new pulmonologist (which will be totally worth the drive to get a second opinion).

So that's where I am today. The flare keeps going, I keep fighting. And I keep trying to have as great fulfilled life as my body will allow. I'm crafting again. And that makes me SO very happy. :)

Ya'll be sweet.

PS - Shout out to Tom! Thanks for coming by. I promise to be more diligent in keeping up with comments.

Sunday, April 1, 2018

Do you know what? I just realized I had comments sitting out there for who knows how long and I never got any ringy-ding notice or anything. So to any who've commented, I'm sorry I'm a dork when it comes to techy stuff. A serious dork. They are all now published. Even though the other entries are "in the dark" at the moment. We'll get through this ok? ok... ok.

Got a steroid blast at noon on Thursday that lasted about 30 hours. That's really all I ever get out of those, so no surprises. I'm back to about 30 to 35mg of prednisone by mouth. Face is adequately bloated to prove it. *sigh*

I had a debate with myself about sleeping through the night, or waking up to take prednisone. I've been opting for sleeping through the night, and that's really not working. Friends, I wake up and its like my right lung is filled with helium. I've been telling people I feel like a greater-than-sign < (or is that less than...I can never tell). but that's what it feels like. left lung "normal" for me, right lung OMG!!!ITS SO SWOLLEN! yeah, it gets like that. It hasn't cracked ribs again, yet, but this has been a bad one. And still at least 3 weeks more to go, before the pollen numbers begin to fall, and my lung simmers down.

While the lung was under the influence of the steroid blast and I had minimal swelling, we attempted a drain, and managed to get 75ml of a substance that looked like strawberry sorbet left out on the porch for two days. then the tube completely clogged up with what the Mr. said "...its the consistency of sausage casing..." umm. yeah. so. I see an out-patient procedure in my near future, within 3 weeks anyway. Still, though, feeling the relief of just that much fluid.

The fever rages on. However!! Today, for the first time in 6 weeks, it finally responded to just Tylenol! I took two Tylenol Arthritis and in about 45 minutes, I was sweating and it was coming down. Yay!!! I've only been fever free 3 times in the last 5 weeks. I can't get it below 99. So double Yay!! on that.

Its been a bad ride, and it aint over yet. Keep sending me good vibes and prayers. I'll try and come back more often now. Its just been one helluva month. After feeling so so so good after the "big drain" back in December. That's all gone now. But I'm sure it will return once the tube is sorted out and "fixed".

Monday, March 19, 2018

Much has happened since my last post. And speaking of "post", the 2 or 4 people who actually used to stop by here, you'll notice all my posts are gone. There's a reason, that I just can't go into today. A lot has happened as I said and I'll keep it brief:

The Short Version:

The drain tube has stopped functioning, and I have not had a successful drain since 22 Feb. I am also in the middle of a darn good lung flare, wherein both are hurting. Most especially the right one that has the tube in it, of course. The prednisone taper came to a halt, and I am now up to 25mgs every 24 hours just to stay on top of it, and may make an appointment for Friday with GP...just in case. Tube doctors keeps saying "...its normal keep trying once a week..." *shake my head*, more to say on that another day.

Had appointment with pulmonologist last week, which ended up being a complete joke, and I'm searching for a new one. Much to say on that when/if I come back. Running fever every day, and some day's its very stubborn and just will...not....stop. Not high, never over 100, but just enough to make one feel like sh*t. And the "sick" is coming back too. *sigh* yet....no one listens.